20 May 2013
Geneticist and academic lawyerAppeared in BioNews 705
Preimplantation genetic diagnosis (PGD) is a technique that allows couples from families with a history of certain inheritable diseases to try and reduce their risk of having a child affected by the condition.
The regulation of PGD rests with the Human Fertilisation and Embryology Authority (HFEA). The HFEA has recently revised its committee structure and consideration to licence genetic conditions for PGD has been delegated to the Statutory Approvals Committee (SAC) who will have a revised decision tree and explanatory note (1).
For each application, SAC needs to be satisfied that the condition meets the statutory requirements (2). Many conditions have already been licensed by the authority but the requests will continue and, to paraphrase the Genetic Alliance UK in its response to the public consultation on the future of fertility regulation, 'we do not believe that regulation of PGD will become easier as the technology 'matures', at least not in the medium term future' (3).
The availability of the technique brings great relief to many families who hope to avoid the birth of a child with a devastating disease. However, PGD has also been licensed for use in late-onset conditions, which means that in some cases, the resulting healthy child will see a parent decline in health during its formative years. Limited research in Scotland among young people living in families with Huntington's disease found that 'while some young people cope successfully, others experience emotional, psychological, and behavioural problems and may be at risk of emotional and/or physical harm' (4).
Huntington's disease is on the list of licensed conditions along with other conditions such as early-onset Alzheimer's and frontotemporal dementia (Pick's) that are expressed in adult life. The relevant websites describe in some detail the effect of the condition on the life of the person carrying the mutation.
So what of the welfare of children born into such families? The responsibility for considering the welfare of the child rests with the clinic offering treatment under section 13(5) of the Human Fertilisation and Embryology Act 1990 (as amended) (5). The clinic needs to consider the availability of supportive parenting and it should refuse treatment if it concludes that any child who may be born or any existing child of the family is likely to be at risk of significant harm or neglect (6). Some clinics address this issue by including the concern within the Patient Information Sheet for the specific condition (7).
As a recent paper in Human Reproduction Update suggests, 'It is important to do empirical research on the psychosocial risk for children growing up with an affected or at-risk parent. This may help to more adequately answer the question as to whether specific high-risk and protective factors for the welfare of the child can be identified, and may contribute to the development of evidence-based, more differentiated, guidelines' (8).
Whilst this issue has been considered in the past (9), it might be an opportune moment to revisit the debate around the effect of some of these conditions on the wellbeing of a healthy child born into families requesting PGD.